Loss of Two Sons Calls Ballwin Couple to Action

Ballwin resident Kristin Akin, along with her husband Justin, founded the Matthew and Andrew Akin Foundation. Kristin also is a semi-finalist for the Energizer Keep Going Hall of Fame, which celebrates those who make a positive impact on the world with their determination, boundless energy and never-ending spirit.

The Akin's story is one of tragedy and perseverance, of heartbreak and hope. A story of finding a single ray of light shining through the blackest sky. At 10 weeks old, Andrew Preston Akin became very sick. He was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH), a rare blood disease. Thus began the Akin's nightmarish odyssey.

HLH is only treatable with a bone marrow transplant. Andrew underwent his first transplant in December 2007, but it was unsuccessful. A second transplant in May 2008 was also unsuccessful, so the Akins transferred him to Cincinnati Children’s Hospital Medical Center to be under the care of the world-renowned HLH expert, Dr. Lisa Filipovich.

Andrew underwent his third and final bone marrow transplant March 2009. Through other testing it was discovered that his HLH was caused by a very rare genetic mutation. Doctors recommended that the Akin's other son, 4-year-old Matthew, be tested.

Matthew was healthy and always had been, so Kristin Akin didn't give it much thought when he was tested. But Matthew was diagnosed with the mutation.

“With Matthew, he was healthy,” she said. “It never occurred to me.”

It was important for Matthew to undergo a bone marrow transplant while he was still healthy. Since Andrew was 6-months post-transplant and doing reasonably well, the Akins consented. Matthew underwent a bone marrow transplant in August 2009. It was the family's fourth transplant in two years. Two weeks later, Andrew suddenly developed complications and lost his battle with HLH.

“The situation was extremely difficult,” Akin said. “I couldn't go home because my other son was still in the hospital. Justin and I agreed we would never leave our children. I saw so many children die. You'd be shocked at the number of parents who are willing to just drop their kids off.”

The Akins remained in Cincinnati by their son's side. Matthew lost his battle eight months later on May 1, 2010. “We lost both kids within 8 months,” Akin said. “Both were in the same ward in the same hospital, and both were getting bone marrow transplants at the same time.”

The Akins went to work to create something in memory of their children, so began work on the Matthew and Andrew Akin Foundation. “We knew we wanted to do something in their name, something for good,” she said. “We were so quick to decide to do it. This was about the suffering of my kids. We started on paperwork immediately and it grew from there.”

The Akins also adopted a son, William, in September 2010.

The Matthew and Andrew Akin Foundation has three primary goals:

• Build a housing structure by Cincinnati Children’s Hospital Medical Center for the families of children with HLH
• Fund HLH research through the Histocytosis Association of America
• Educate the public on the importance of joining the National Marrow Donor Program

There is not only a great need for people to get on the bone marrow registry, but it's easy, requiring only some paperwork and a swab of a cheek, Akin said.

“There's a shortage of bone marrow donors and only a 25 percent chance that family will match,” Akin said. “After that, everyone else is the same. Being an organ donor is great, but with bone marrow, you're back on your feet the next day, and you've maybe saved a life. The odds are you'll never be called.”

Akin said HLH is considered an orphan disease, so funding for research is important. An orphan disease is defined as a disease which has not been adopted by the pharmaceutical industry because there is little financial incentive to either make or market a medication for its treatment.

The nomination for the Energizer Keep Going Hall of Fame came as a surprise to Akin.

“I was honored,” she said. “I feel it's my responsibility to be honest. I just feel that God wants me to get up every day and do good."

The top 10 finalists for the Energizer Keep Going Hall of Fame will be announced Monday. To vote for Akin, visit the Energizer Bunny Facebook page.